Monday, 26 December 2011

Well it's almost 1am Boxing Day and here I am unable to sleep yet again due to my FM and the RA in my shoulders. I had the same problem last night, or rather early Christmas morning as I fought to find a comfortable position to sleep without making my pain worse. I was still trying at almost 4am in the morning when I finally dozed off only to be awoken what seemed like minutes later by Mother who said my brother had already called to see if we were ready to come to his house for Christmas breakfast as has been our ritual since my eldest nephew was born and it became a full-fledged flitting when they tried to come to us.

I hope everyone's Christmas was wonderful and that you all got lots of lovely gifts which you appreciate and those you gave prezzies to were just as pleased. As for myself I knew what I was being gifted in advance from my parents, clothes and a new wireless keyboard/mouse for my desktop computer. I also knew my aunt had been busy knitting ponchos for most of use nieces so I knew I was getting that from her as well. The only unknowns were from my brother and his family where I again received clothes in the form of a new pair of boots, slippers and a woollen top from my three nephews.

Sunday, 25 December 2011

In the time of festive cheer and goodwill to all I am once again faced with the selfishness of some. My two single aunts always spend Christmas Day together for as long as I can remember. The single one would visit the divorced one and her children and spend Christmas Day with them having Christmas lunch together. This has been the habit/ritual for as long as I can remember.

Even though the children are all grown up and only the youngest sharing the family house they still spend Christmas together, so the single aunt who is older just went through a knee replacement operation a couple of weeks ago.

So the elder aunt is unable to travel across to her sister's home for the Christmas lunch so common sense would dictate the other aunt who is mobile travel to the other aunt's flat and prepare/have lunch there. But her excuse not to do this is that she would have to pay for a taxi both ways on Christmas Day which is one of the two most expensive days to travel via cab in the year.

So my single aunt has been alone all day and only got Christmas lunch because a neighbour upon hearing she would be alone for Christmas is bringing her lunch over from her house so at least she would get a proper Christmas lunch.

Never mind that the immobile aunt has had to pay the same taxi fares each way every Christmas for more than 20 years. Rather poor excuse if you ask me to leave a relation alone on Christmas Day given the many years she's spent with them on Christmas and paid taxi fares herself every time.

Unfortunately we had our own family to see to today and I'm unable to travel due to ill health and all my limited store of energy is gone with the travelling we had today to my brother's.

I think a cousin of mine finding out she would be alone all Christmas Day is going to try to get across and spend some time with her so that's she's not alone all day. Merry Christmas indeed.

Thursday, 22 December 2011

Well I'm not long back from the hospital where I had a 45 minutes assessment with my physiotherapist. First major shock ... it wasn't the female therapist I saw at the hospital who I was supposed to see in conjunction with the occupational therapist I was referred to at the Rheumatology Clinic.

This time a unknown male physio went through a assessment which took 45 minutes to do. I was a bit uncomfortable to be honest I was expecting the female I saw at the hospital who was supposed to be my therapist along-with the OT who brought her into the case.

He asked a slew of questions and did a routine examine which showed basically what was already known. I had no swelling around any joints but that doesn't say I don't feel pain non-stop from them. At least there was questions about pain levels which I stressed were always on the very high end of the scale.

He asked if I had seen a OT, which I said I was referred to initially and it was her who brought in the physiotherapist which triggered the referral to the appointment I was attending but I hadn't got an appointment through yet for the OT. This I find disturbing as I was referred to OT not PT but this is the only assessment/appointment I've been to.

I was given three exercise for my left shoulder which was badly affected and little to no mobility and told just to keep doing my other exercise given for my spine/RA joint problems. So the PT is concentrating on my left shoulder joint and regaining mobility with it.

My entire body is hurting all over now and I'm in even more pain and more exhausted than I was before I went.

I have an appointment three weeks from Monday with the same therapist so see my progress with using these exercises at 3 to 4 times daily in sets of 10.

But then the same problem occurs my other joints are able to be manipulated easily by therapists/doctors but that's not to say I can do the same moves independently and without pain. There seems to be this belief that if there is no swelling it's OK.

I explained how my hips/back/knees were worse now than before and my severe loss of balance even worse than before and the therapist explained that my body has been dealing with RA putting pressure on these joints since day 1 and now 12 years on this is be expected. So that means my knees/hips will never get better than they are now which is quite a degeneration on when I was diagnosed 12 years ago.

He asked if I was working! I doubt an employer would take me. I don't sleep at night which I explained, wake up more tired, stiff and in pain that the night before, and it takes at least an hour to an hour and half before I have able to get relief from the extra stiffness/pain and go back to the continual stiffness/pain that stays with me all day. Standing/walking puts a lot of pressure on my back/hips/knees which make my pain worse which he accepts and understands. While sitting isn't as bad as the pressure is off these joints I can't sit comfortably for long and have to use my leather padded adjustable chair.

All in all a mixed result for me. I would a whole lot better if I would get my OT started as I belief that that will be more important the PT for my condition. He started asking what my usual day was like but I got as far as getting up and the extra stiffness/pain wearing off to allow me to go out if I need to go shopping but he didn't ask about tasks like cooking, making a hot drink, and so on that the OT mentioned, the only daily tasks he covered was getting up out of the bed when I explained my difficulties with that and showering which I said I needed help with as I couldn't get in and out of the bath safely, and help with my back and other parts I couldn't reach/do myself - the same with drying myself.

Must be the OT job to help with these tasks as they weren't covered. Only the showering problem I have was covered. Along with my problems getting in/out of bed.

Also very disappointed as the original therapist I was supposed to see was a specialist with fibromyalgia as well as RA and he didn't ask/mention anything about my Fibro and the problems it causes. Only my difficulty sleeping was covered because he asked about my tablets.

Between lying courier services who say they attempted delivery two days running when they didn't and I have at least 3 adults to prove so and relatives who expect me to drop everything and act as an unpaid taxi service I am frustrated and totally fed up.

Monday, 19 December 2011

I really hate shops, sellers and courier services who say they will despatch/deliver in a particular time slot/date and your orders sit stationary for days. All the while promising delivery for Christmas.

I ordered three shake and go cars to go with a present we bought Friday for my youngest nephew as the shop didn't have any available. I double checked before placing my order that I would get the delivery before Christmas and even paid for expedited despatch/delivery and my order has sat on Despatching Soon since Friday afternoon and here we are Monday afternoon and my order which I paid extra for quick despatch/delivery is still not been sent out and it's stating delivery estimate on the 20th which is tomorrow and still haven't despatched the order.

Frustrating to say the least. If I don't get my order through by Christmas which I paid double postage price for I will not be a happy camper.

Another order sent out Friday for next day delivery from City Link is still on it's way from the collection depot and not further update since Friday night when it was sent out to the collection depot. It must be walking to the local delivery depot that's all I can say. So next day delivery - total fail.

My last order - of the three placed last week - was split in two my Amazon and has been despatched by Royal Mail. I wonder if those two parcels will beat the two expedited ones!

Tuesday, 13 December 2011

My father who was supposed to only be going to his sister to pick up a letter to hand in at her doctor's practice and left here over 2 hours ago to do this, is just now on his way to do this. Frustrating as we told him due to the fact we were waiting at my brother's house for his old suite to be picked up he would have to do this and come straight back here to let us away to do the school pickup. And only now an hour and a half after reaching his sister's is he now going to hand in the letter, and he wonders why we were upset that he isn't already on his way back to cover his house while we go to the school.

I have to leave no later than quarter to three to get across town to the school and here I am with only a half hour to spare till this time and he says he is only now heading over to the doctor's surgery, then he will have to get a bus and walk in from wherever he gets off the bus to my brother's house as it's a fair distance away from any bus stops.

And he's surprised we're upset!!

Grr ... and they wonder why there is so much domestic problems when men don't listen, no offense to any men who actually listen and do what the say they will when they say they'll do it.

Friday, 9 December 2011

As well as at least £6 lighter in purse. It's fair to say that their Christmas Craft Fair was a success, started at 2pm and when we left with the boys at 2.40pm most cakes, sweets and Christmas decorations were almost gone.

My nephews are totally sugared up and luckily they seem to not be too hyper just yet. Hopefully any sugar high will occur when their parent come to pick them up not beforehand.

I've just returned from the city centre, managed to get my chocolate rations that are Xmas pressies from Thornton's as usual, as well as getting my aunt's present.

Didn't manage to get anything for my sister-in-law as I ran out of time and needed to get back to have my second doses of medication before heading out to my nephews Christmas Craft Fair.

Already exhausted but at least this is my last journey out - that I know - till Monday when I will again endeavour to battle the city centre and succeed in getting my sister-in-law's gift in.

I finished by Father's gift by getting the diabetic gift box from Thornton's which isn't available on-line for delivery so I had to visit in store. Went in for that worth around £12 and came out with £30 worth of pressies. Got a nice box of mint selection at half price and some stocking filler type plushies with chocolate penguins which I can either use in my nephews advent calendar which I will be filling up this weekend for them for when I have school pick-ups next week.

Thursday, 8 December 2011

Before anyone panics I am not contemplating suicide but if you are reading this and either you yourself or someone you know is battling such thoughts please please please reach out and get help. Nothing is worth ending it all, regardless of how you feel now, I've had my own dark thoughts and even tried ... and I stress the word tried ... similar as a teen and remembering how I felt then still terrifies me immensely. Think of the positives, if you have family, think of them and reach out there are those who can help.

I want to have a life again, where going out to something as simple as a winter craft fair at my nephews primary school doesn't fill me with dread. But it does.

The current climate towards those who you know are physically (or mentally/emotionally) disabled has made doing the simplest of daily tasks which require you leaving the sanctity of your own home nearly impossible. As well as stressful and terrifying.

Pages

Followers

About Me

I am a disabled woman who lives with her elderly parents. I am the proud auntie of three active boys. I worked from the age of 16 full time until I became unable to work as my disabilities degenerated further.